Dear DMAS Representatives,

I am writing as the mother of a four-year-old son with Level 3 autism to express my serious concerns regarding the proposed changes to Virginia Medicaid's Applied Behavior Analysis (ABA) services.

My son, Niko, is nonverbal and requires substantial support in nearly every aspect of his daily life. He struggles with communication, following basic instructions, emotional and behavioral regulation, and understanding danger. He also has a history of elopement, which presents significant safety concerns.

For children like my son, ABA therapy is not simply an optional service or an extracurricular activity. It is a medically necessary intervention that helps them develop essential life skills, improve communication, and work toward greater independence.

My first concern is the proposed 20-hour weekly limit on ABA services. I understand that additional hours may be approved based on medical necessity, but requiring families and providers to navigate additional approval processes creates unnecessary barriers to treatment.

A child's disability does not become less significant after 20 hours of therapy. Children with Level 3 autism often require intensive, consistent intervention, and their needs should be determined by qualified professionals who work directly with them, not by a generalized weekly limit.

Even temporary disruptions in therapy can interfere with consistency, progress, and the development of critical skills. Families should not have to repeatedly fight to maintain treatment that their child's medical team has already determined is necessary.

My second concern is the mandatory weekly caregiver participation requirement. As a parent, I absolutely recognize the importance of being involved in my child's treatment. However, there is a difference between encouraging meaningful parental involvement and imposing rigid requirements that fail to consider individual family circumstances.

Many parents are balancing full-time employment, other children, medical appointments, and the demands of raising a child with significant disabilities. Parents should not have to choose between maintaining employment, meeting their family's basic needs, and ensuring their child continues receiving therapy.

Caregiver participation should be individualized, flexible, and designed to support families rather than create another obstacle to their child's care.

My third concern is the proposed discharge requirement following a break in services exceeding 31 days. This is particularly troubling because interruptions in therapy are not always within a family's control.

Children can experience serious illnesses, hospitalizations, family emergencies, or other circumstances that temporarily prevent them from attending therapy. Requiring families to restart the diagnostic, assessment, and authorization process after such interruptions could create substantial delays in resuming medically necessary services.

My son's autism does not disappear because he misses therapy for a month. His diagnosis, challenges, and need for support remain. It makes little sense to place additional administrative burdens on families simply because circumstances beyond their control temporarily interrupted treatment.

I also want to emphasize the emotional and practical realities of raising a child with significant developmental disabilities. We spend our days advocating, attending appointments, coordinating services, addressing behavioral challenges, and worrying about our children's futures.

We are doing everything we can to give our children the best possible opportunity to succeed in a world that is already difficult for them to navigate.

These children deserve individualized care based on their actual needs, not policies that prioritize administrative convenience over access to treatment.

I respectfully urge DMAS to reconsider these proposed requirements, preserve access to medically necessary ABA hours, allow flexibility in caregiver participation, and establish reasonable exceptions for unavoidable interruptions in care.

I understand the importance of responsible Medicaid spending and appropriate oversight. However, those goals should never come at the expense of vulnerable children who depend on these services.

My son cannot speak for himself, so I will continue to advocate for him. I ask that you listen to the families raising these children and consider the real-life consequences these changes could have.

Thank you for your time and consideration.

Sincerely,

A Concerned Virginia Parent